Newbie who needs help

[dawn24]

I'll keep trying. Thanks for all the advice and encouragement. 

He and I have both been very 'dark' the past few years.  Me because I don't have any family left and I'm basically on my own at the age of 38.  It gets quite overwhelming at times.  Him because of his struggles with his diabetes the past twenty years (type 1)  And since his Mom just passed away in June reaching out to him on "our dark level" seemed to be the way to go.  Talking to him about death--his own, his Mom's, my parents . . . .because I know those are the thoughts he's been swimming in . . .I know from experience because I just wanted to give up when I lost my Dad last year and I'm not even in kidney failure.

[jbeany]

 

[rsudock]

Hello Dawn and WELCOME to IHD!!

I agree with MOOSEMAMA when she says that maybe he is testing you. I know with my boyfriend (I am the one with ESRD) I would really push him to see where his breaking point was...it wasn't right, but it is the truth. Being the sick person you start to think about what your life is doing to the other person. You do think about how much the other person is sacrificing to be with and love you. I think this is even more true for people who are not married first before they get sick. You think about the burden you may become on the person...it is very frustrating for both parties.

Some things that may help, things that meant a lot to me when I was on D...I know your man is on PD so it maybe a little different: go to the D training session with him, cook him dinner, make him a playlist on his IPOD of upbeat music, slow dance in the living room, write him a love letter....

Just be there when he needs you and give him space when he needs that...it is hard loving someone who is trying to work all this kidney stuff out but he will come back surely but slowly...it takes time to adjust to D. Thank you for being a caregiver!

Good luck friend,
xo,
R

[dawn24]

Thank you, I wonder if this could be the case . . . Got a strange text from him last night while I was asleep.  All it said was "have a ?"  I responeded but haven't heard back from him.  I'm slightly worried as his Dad is out of town right now and he's home alone. . . .

Back when he first hit Stage Four in May he had a meltdown during one of my visits, literally cried on my shoulder saying he was dying.  He had actually even begun to get rid of his stuff.  I told him then and a year ago that I'd give him a kidney.  He said he didn't want me to do that because he was afraid something would happen to ME

[lmunchkin]

Oh dawn, this don't sound good at all!  Have you still not heard from him?  I understand his reaction totally!  My husband was not going to take mine either, even if he had been eligible!  It's ok though, we have adjusted pretty well now!

You may not be married to this guy, but he has been in your life for quite awhile!  You probably feel like his wife!  I know from your posts, that you really care about this guy, and had you both married, you would have done what most of us have done for our spouses, "tend to their needs" in everything!

If he see's tying you down to his disease as not what he wishes, then please understand from his side! He knows you have suffered many losses in your life and doesnt want to put you through his! If you don't get married, its still not the end of a beautiful friendship is it?  Just be there and check on him ever so often, let him know you would be there if he needs you for anything?

It breaks my heart to hear of his pain and what love he has to not want you in to it with him!  That is admorable, but it still leaves your heart Broken, nonetheless!!

I hope & pray that things work to some good for you both!

lmunchkin   

[RichardMEL]

phew tough stuff. Very tough.


One small positive thing, to me anyway, is that although it is erratic and sad/worrying he's STILL communicating... even a little. So there's some hope there IMHO.

I hope whenever he pulls out of this depression he realises how special you are and good to him. I know I'd love someone like you in my life (be it friend or otherwise) who cared so much and would stick in there despite all the pushing (as Rachael says, maybe it is some kind of weird 'test' to see how much you really care...)).

You're probably doing more to help him than you realise. The regular contact, without pushing for stuff, just reminding him you're out there and give a damn, is perhaps supporting him in ways neither of you will ever know.

Hang in there.

 

[dawn24]

Thanks for the encouragement.  Still no response    I wonder what that was all about?

He has his cath placement surgery on Monday.  I've gotten him a couple of T-shirts from the online store and made a 'dialysis sucks' box for him to put his thoughts into when everything gets overwhelming. 

I welcome and and ALL advice on what encourging things to 'say' to him.  What did people say to you that helped?  What pi$$ed you off?

My realtor is coming over tonight so I can list my house.  Anyone want to buy a haunted house?

[st789]

Step out of the house would be a way to lift up the mood.  Whenever, the kidney stuff is overwhelm, change up a bit to other focuses.

[dawn24]

I'd love nothing more that to take  him to a movie, but can't really do that since I'm 1500 miles away     Gotta get my house sold and my butt moved down there first

[rsudock]

Dawn one thing that honestly helped me deal with D is when people stepped up, called the tranpslant center, and got evaluated for transplant....maybe it would give him hope.....

xo,
R

[dawn24]

I'd like to, and I already said I'd give him one.  Don't even know where he is in the process of getting approved yet.  His Dad is supposed to call me after the cath placement surgery on Monday so maybe he'll know that information.  Thanks!

[lmunchkin]

Have you heard anything yet?  I know you must be beside yourself right now with worry.  Please let us know as soon as you hear something, okay? We are thinking and praying for you both.

lmunchkin     

[dawn24]

I've been taking everyone's advice and just "talking" to him through email.  Saying I don't need a response, it's just me talking to him.  I understand grief, but not kidney failure.  I've talked to him about the grief, saying things I know only those of us who have been there would 'get'.  Then saying I'll never understand the kidney failure but I've been educating myself and here when he needs me, that the tube or machine doesn't bother me.  Last night I got a picture of his foot.  Seems it's infected and might need to be amputated, the leg as well.  I responded like that wasn't a big deal to me, love him appendages or lack there of. Made some jokes. His texts were very dark and suicidal.  I didn't try to "pull him out of it"  just let him be the way he needed to be and said I understood but to try to hang on a little longer.  But today I actually got a response to one of my texts that wasn't from 'the dark place'.  It was a response like normal, every day conversation.  My heart soared

[rsudock]

  It was a response like normal, every day conversation.  My heart soared

    


so sorry to hear about the possible amputation 

xo,
R

[dawn24]

I don't know how 'true' the amputation information is, or if it was just a test to see how much I would stick around for. . . .   I know it IS a very real risk with diabetes and a limb infection, but don't know if it's to that point yet.  Today is the day he has his cath surgery.   He hasn't responded to me since Saturday.  I reached out to his friends Saturday and they've started to rally around him.  I don't think they knew just how seriously ill he's been.

I got near my breaking point this weekend but then reminded myself that I still have all my appendages and don't have to hook myself up to a machine every night to clean my blood, so life is good.
.

[dawn24]

Ugh.  Just got a message from his friend that took him out on Sunday.  He said he didn't seem all that depressed.  Am I the ONLY one he shows his darkness to?

[billybags]

Dawn, not to be funny but you sound like you are doing all the running here. Are you sure he wants you to move near him, I would really search my heart before you do this. Sorry if this sounds, well not nice.

[dawn24]

Yes, I'm from there and I've been wanting to move back home for five years.  DBF has always been dark, moody and introverted in all the years I've know him. And he's always been that way with me.  Told me things he doesn't share with anyone else, like when he started getting rid of his stuff when he hit Stage 4. . . . I still refuse to believe that he suddenly stopped loving me because his Mom died and he has to do dialysis.  After he told me in May that I've always been 'the one'.    I'm going to be there when he needs me, darn it!  I don't think he's told his three closest friends about the kidney failure 

[lmunchkin]

Now, I dont mean to say that he is going to have some amputation done, in fact, I pray not!  But Dawn, if he has diabetes and has not taken care of it, more than likely, not seeing the pic's or anything, he will have to have some kind of amputation!  This is probably, Im sure, what caused his Kidneys to fail.  Now with CKF and diabetes, the two mixed together is "almost" impossible to avoid some sort of amputation!  Now that doesnt mean he will, just saying from experience, that it is likely, over time, that it will be unavoidable! Does that make sense?

My husband had Diabetes and did not know it!  He never went to doctors or anything!  When he got sick and went to ER, they admitted him immedicately!  He almost died right then and there! He was diagnosed with ESRD, due to Diabeties and High BP.

He constantly had problems with his feet.  Gangerine infection, then amputation of toes till He had below Knee amputation and no toes (half foot) on the other!  I also, will not tell you that it has all been rosy!  It hasnt!  And if after all the things people have told you on here, you still want to be with this guy, then you must be prepared for these things to happen! 

I have been married to my husband 10 yrs when this dreadful disease happened.  You are not married to him and to go into this with him WILL effect your life immensely!  Your eyes are wide open to what he maybe facing!  The fact that you want to move next to him is very Commendable! It is also good that you are learning about this stuff.  Arm yourself with knowledge so that you might advocate for him!

Praying for you and him!

lmunchkin   

[dawn24]

Oh yes, I know it's a very high possibility that he will lose some limbs or digits.  In fact I knew that a year ago, and we even talked about it.  Not an issue for me at all.

His cath placement surgery yesterday went well, and he got to keep his foot (for now).  His family was supposed to contact me and let me know how it went, but he actually did it himself!  This is the guy who has not been contacting or responding to me at all unless it's very sad, desperate, dark messages.  Baby steps

[Bajanne]

We are happy for the baby steps!  Looking forward to the teenage, adult, and then giant steps!!

[lmunchkin]

Dawn, any idea why that is?  His coming to you only when he is sad or dark, and not his family?  Are the times he is talking or with you more sad and dark than happy times?  If that is the case, I really think there are some underlying issues going on with this man!  I mean I don't know, Im not doctor or anything, but it just seems odd to me!

Sorry, I don't mean to pry, it just that Im not only concerned for him, but you too!  You seem like a sweet & caring young lady!  I believe, correct me if Im wrong, that you said he has always been this way?

lmunchkin     

[dawn24]

I've known him since I was 14, he's always been introverted, slightly insecure, and his is one of those famlies that 'doesn't share feelings'.  He only really talked to his Mom, and even then didn't tell her all that much.  In fact, apparently when I was 16 I said something that hurt his feelings and I didn't find out about until 20 years later.  Yeah, he carried that with him all that time and never said a word to me even though we hung out as friends off and on for the next 20 years.  It was just this past year when my Dad died and we started dating that he started telling me his deepest fears, hopes, and dreams.  I saw a very intense side of his personality that I didn't know existed.  We really leaned on each other and opened up to each other about EVERYTHING.  I can only surmise it was because I myself was so raw with grief that all barriers were down.

I see it as a good thing that he's using me as a 'go to' person to vent to when he's overwhelmed.  Him talking, even if it's 'bad, dark stuff', is important because otherwise he wouldn't be saying anything at all about his grief and the effect having to go on dialysis is having on him. 

I do have to admit though that today I'm very tired and overwhelmed myself and just want to shut down.  I feel very lonely, I have no family left and I really miss him, our connection was very strong on many levels.

[dawn24]

Got another message that wasn't from the 'dark place'.   I'd sent him a care package.  He loved it and said the "Dying for a Kidney" t-shirt made him smile 

All your advice is paying off    I don't post in threads much but I am learning SO much from this board, this is a great place

[boswife]

    Im rooten for ya   He's a lucky man and Im getting the feeling he may be realizing that.  Hope so  ..  Best wishes on getting your move on     And yes, this board is amazing isnt it.  Saved a lot of us from the depths of despare im sure.